Maureen Kennah-Hafstein sits in front of her favourite dogwood tree in her backyard. Medication and supplements help to control some of her symptoms but each night she endures a painful withdrawal with uncontrollable movement and spasms. (Tracy Hughes/Salmon Arm Observer)

Salmon Arm woman fights for a life-changing surgery

Parkinson’s patient lobbies government to fund another operating room and reduce wait time

The Salmon Arm woman has had Parkinson’s Disease for 12 years and has fought to find research and treatments to help her condition, including one that has even had her step into the boxing ring to try to help her stave off deterioration in her balance and coordination.

But right now her biggest fight is to open a door to a treatment which could dramatically improve her health.

It is the door to a second operating room in B.C. that would allow for an already-trained surgeon to step in and begin doing Deep Brain Stimulation (DBS) surgery, thereby reducing the wait times for Parkinson’s patients who are currently being forced to wait nearly two years for the surgery.

Currently B.C. only has one neurosurgeon, Dr. Christopher Honey, providing this surgery to Parkinson’s patients. Parkinson’s Disease is a complex degenerative brain disorder that affects a person’s ability to move. While DBS is not a cure, it can provide a significant impact on the patient’s health and quality of life – often helping to slow the progression of the disease for many years.

Honey has already trained another doctor in the procedure, Dr. Zurab Ivanishivili, but he is not able to perform these surgeries and ease the wait times as the B.C. government has, so far, been unwilling to provide the funding to equip and run another operating room.

Unfortunately, for the surgery to have benefits, it must be done within a certain window of time. If the patient’s symptoms become too severe, the operation no longer has a good chance of success and those patients become no longer eligible for the procedure.

Kennah-Hafstein is one of those people. She has already been waiting 12 months and was recently told it would likely be at least another nine months before she may be able to receive the DBS procedure.

And so she waits and notices as her symptoms progress. And she hopes that her time will not run out before the surgery can be performed.

But Kennah-Hafstein is not about to sit back without fighting for change. She has decided to advocate, not only for herself, but for all the other Parkinson’s patients in the province who could benefit from this procedure and those who may need it in the future.

In an interview with the Observer, conducted largely by e-mail and texting because her Parkinson’s is limiting her ability to speak, Kennah-Hafstein has started a letter-writing campaign to the government, encouraging everyone she knows to advocate for the additional operating room funding. She has spoken with Shuswap MLA Greg Kyllo and contacted Health Minister Adrian Dix’s office.

And, while this former chemistry teacher at Eagle River Secondary in Sicamous, is a private person who doesn’t want to burden others, she agreed to share her story in hopes it will draw attention to the issue and ultimately lead to change.

“My decision to go public with my personal story of living with Parkinson’s was not an easy one. My daily reality is that I cannot write anymore, most of the day I cannot speak and for a few hours every evening, I cannot even stand up. But I can type!”

Kennah-Hafstein says it is incredibly frustrating to know her situation doesn’t have to be like this – that her life and her symptoms could be dramatically improved with surgery. She encourages all Parkinson’s patients and their family and friends to join her in this effort to raise awareness about the wait list, write letters to the health minister’s office and lobby for change.

“What I am most scared of right now is losing the opportunity to recover the last bit of ‘normal’ that I still have because of the long wait time for surgery,” she types in a message, as her ability to handwrite has also been severely compromised. “Surgery is not a cure, it only helps you to turn the clock back on some of the more troubling aspects of this cruel disease. It can only turn the clock back so far. Eventually your brain is unable to produce any more dopamine and you are unable to move or function whatsoever.”

An economic benefit

Wait times like Kennah-Hafstein’s are one of the biggest frustrations for Dr. Honey, who finds himself thrust into the role of lobbying the government for the additional operating room time and equipment.

Honey notes that Alberta has two surgeons performing DBS, Quebec has four, Manitoba has two and Saskatchewan has two, while in British Columbia there is only one.

“My understanding from the government is that the targeted wait time for surgery is 26 weeks. All of my patients are now waiting at least two years. There’s a problem with this and it needs to be brought to attention,” he says.

“I have a solution. I have someone trained who could start performing these surgeries tomorrow, if the government would just fund it.”

While his patients’ quality of life can improve immeasurably with the surgery, Honey points out there is also a dollars and cents argument that should make the government sit up and take notice.

“In many cases with the DBS, patients can go from being on disability and costing the system, to being able to go back to work and contribute once again as taxpayers. Or they are once again able to look after themselves, so the spouse who has had to leave their job to care for them can go back to work and pay taxes. Or, if they can’t go back to work, they can look after themselves and don’t have to go into a nursing home for care – that is a huge savings to our health-care system.”

Honey also notes many Parkinson’s patients are severely compromised by their condition, requiring many trips to emergency rooms and expensive medications. The DBS surgery can cut back on all of these costs.

Political effort

Health Minister Adrian Dix’s office did not respond to the Observer’s request for comment on this issue by press deadline.

When contacted by the Observer, Shuswap MLA Greg Kyllo, who has met with Kennah-Hafstein, says he was granted a few minutes with Health Minister Adrian Dix on Thursday, May 31. He was told he should hear more on the issue by Friday, June 8. Kyllo agrees there appears to be a broad economic benefit to getting people back to work, or requiring fewer publicly funded health-care supports like nursing homes or emergency visits.

“I understand the urgency in this case, where people may no longer qualify if they wait too long…,” says Kyllo. “I think the government needs to take a real look at relieving the pressure on this wait list, especially in the case of such severity. I hope the minister will take it very seriously.”

Quality of life

As her body movement becomes increasingly out of her control, Kennah-Hafstein is determined to take as much control she can over her life by researching and trying a complicated mix of medications and supplements designed to minimize her symptoms.

The problem is many of these come with dependence issues and require increasingly greater quantities to take effect.

To try and alleviate this, each evening Kennah-Hafstein reduces or eliminates dosages and goes through an intense, painful withdrawal as her body twists, spasms and moves uncontrollably.

“I literally feel like my health and happiness are being held hostage to the medical system in B.C. My suffering and the emotional toll on my family is absolutely unnecessary. The prospect of having to endure more is frightening. I honestly cannot say how much more I can go through each evening.”

Maureen Kennah-Hafstein with some of the supplements she takes each hour to help with her mobility. Unfortunately to delay dependence, Kennah-Hafstein must stop taking it in the evening, resulting in painful and debilitating problems with her coordination and muscle control. (Tracy Hughes/Salmon Arm Observer)